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  • Ellie
    replied
    How's the macho nose doing with the new mask Andy?

    Love Ellie.

    Leave a comment:


  • nunhead_man
    replied
    Good evening

    Yes, sorry Ellie I know you communicating this way - I think you are a wonder to keep going in the way that you are.

    My alternative mask arrived in the post this morning so I will try it this evening and see how my nose fares!

    Leave a comment:


  • Ellie
    replied
    Originally posted by nunhead_man View Post
    In case you have not noticed one of the things that I get ratty about is the exclusive / excluding nature of acronyms.
    Yeah Andy, and I use eye gaze to type, hence the acronyms....

    Leave a comment:


  • nunhead_man
    replied
    Hi Ellie

    Okay - Thanks again

    So we have……

    Pulmonary function tests (PFTs)
    Forced vital capacity, slow vital capacity, or inspiratory vital capacity (FVC/SVC)
    Maximal inspiratory pressure (MIP)
    Maximal expiratory pressure (MEP)
    et cetera (etc)

    In case you have not noticed one of the things that I get ratty about is the exclusive / excluding nature of acronyms.

    As the next time I see the consultant I have a St Thomas's, will be in January 2020 I just asked for the latest numbers now

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  • Ellie
    replied
    Hi Andy,

    If you want to know how your breathing is doing, the “alphabet soup” (nice one ) of data is how you track it.

    As our diaphragm and intercostal muscles weaken, it affects how much we can breathe in and out, as well as how much we can fill our lungs - and those FVC, MIP & MEP tests show how we’re doing in this regard. If you want to know your figures after the January tests, you can ask for the results or even take a photo/scan of the results page.

    The data is also an early warning for NIV / BiPAP use, for those wishing to use it.

    Although MND doesn’t directly affect our lung health, a side effect of not being able to cough effectively, take deep breaths and have a poor swallow which may cause aspiration episodes is that we can’t always clear (bacteria laden) mucus and often get (recurrent) chest infections or pneumonia. This is where Cough Assist machines can be beneficial in helping lung health, as well as providing physical relief and comfort to the user.

    Love Ellie.

    Leave a comment:


  • nunhead_man
    replied
    Good afternoon Ellie

    Originally posted by Ellie View Post
    Do St Thomas's resp team give you full Pulmonary Function Tests (PFTs) too or, at least, does someone regularly monitor your PFTs and keep an eye on your FVC/SVC, MIP, MEP etc?
    As I have just said to Dina I got my Nippy when having a base line test and sleep apnoea was diagnosed.

    As to the other alphabet soup. I am afraid I do not recognise any of the other items you mentioned, but they do give me a full breath test when I go in - at least they have on the two occasions so far, the next one being in January 2020

    Leave a comment:


  • nunhead_man
    replied
    Hi Dina

    Originally posted by Gillette View Post
    Is sleep apnoea a symptom of MND?
    As far as I know not - this was picked up for me when my neurologist wanted a based test of how my breathing was so that subsequent tests which show when it was deteriorating.

    Leave a comment:


  • Ellie
    replied
    Andy,

    Do St Thomas's resp team give you full Pulmonary Function Tests (PFTs) too or, at least, does someone regularly monitor your PFTs and keep an eye on your FVC/SVC, MIP, MEP etc? (I think I asked you before, sorry)

    It's just I wonder if you do breath stacking exercises or perhaps your FVC is good, so they aren't necessary?

    Love Ellie.

    Leave a comment:


  • Gillette
    replied
    Hi Andy

    Is sleep apnoea a symptom of MND? I don’t know. I know that weakness of the muscles for breathing is, which was why I mentioned it.

    Leave a comment:


  • nunhead_man
    replied
    Hi Dina

    Originally posted by Gillette View Post
    The Nippy is used when your chest muscles have lost some of their strength and your lungs are no longer able to expel enough carbon dioxide
    That is quite right but actually in my case as I am practising for when my lungs do not work properly - at the moment, the diagnosis is sleep apnoea found when my neurologist was wanting a base line test on my breathing and oxygen levels overnight.

    I am increasingly finding that sleep apnoea is very common and it may be that the oxygen deprivation arising from it may be 1 of the reasons why the size of brain is thought to be smaller than it ought to be.

    Leave a comment:


  • Sheila
    replied
    Thank you Lynne, that is good advice as Well. It is hard to find a happy medium with all our problems. My husband takes naproxen for pain, he said it is very good.
    Sheila

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  • Lynne K
    replied
    I've been prescribed Omeprazole before MND as the Naproxen an anti-inflammatory drug that I'd been on for years wrecked the lining of my stomach especially the eroded top of it. But I didn't take the Omeprazole because it can interfere with the uptake of calcium. And it can interfere with your uptake of Rilozone. So I take care of what and when I eat instead of the pills and that works for me most of the time. I avoid eating before bedtime and always avoid too much fat. I'm caught out sometimes though and loose most of a night's sleep because of reflux, heart burn and feeling sickly. I miss Naproxen though. It's a great pain killer for some conditions. Lynne
    Last edited by Lynne K; 12 November 2019, 16:26.

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  • Sheila
    replied
    Thank you Ellie, I think you are right. The doctor gave me omeprazole to take. And I can dissolve it in water. Hope it helps.
    Love Sheila

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  • Ellie
    replied
    Sheila,

    It could well be reflux, given that you've a burning/hot feeling which mostly happens lying down.

    Because our tummy and chest musles weaken, reflux often rears its ugly head and spams, heightened reflexes - oh, the joys!!

    Hope those meds work for you.

    Love Ellie.

    Leave a comment:


  • Sheila
    replied
    Hi Ellie
    It started about 3 months ago, but seems to be happening more now. Not really breathless.I think it is just the chest but also my back. I get no warning it just happens. Hard to explain really, sometimes it happens when I lay down for a nap. Maybe I am over worrying.
    Thanks,
    Sheila x

    Leave a comment:

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